I must be the real me.
Beyond blogging and writing about knowledgeable subjects, exists the lives we live every day. We all wear so many hats. Mine happen to be a mom, wife, graphic designer and more.
Behind all blogs are human experiences that are the life of each writer. Our individual existence makes us interesting people, capable of teaching the information we have learned along the way.
Have you ever read a blog and fell in love with the writer because they were real? You learned about their kids, their championship games, and began to root for them. Their husband was applying for that big new position at his company. You found yourself feeling genuinely happy when he succeeded.
It’s so easy to relate to writers as their stories unfolded in post-after-post. This post is one that has been in my drafts, I have started it so many times, and was too embarrassed to publish.
I believe deeply, putting on my best face and trying to pretend I excel at everything I touch is not what I wish you to believe. Every fiber of my being is a creative person, I love graphic design and art.
What I truly adore is the relationship built with my customers throughout the years. I spoke to hundreds of clients during monthly website marketing consultations. We talked about business, but the conversation always turned to their lives and mine. I looked forward to monthly calls with so many of them.
This is what I hope to create between myself, my words and you, a connection. In order to do so, I must be the real me.
One of my hats I wear is of a chronic pain patient, I seldom admit that to many. My creative story truly began when my illness hit me hard. Through life I have always drawn, it was a gift.
While young, I set aside that gift, using it sparingly because there was always time. Before I knew it I was a mother of 2 wonderful girls, and my drawing would wait until retirement. Soon, I found myself in my mid-thirties and in the midst of my career as a graphic designer.
Drawing would have to wait. It wasn’t until I found myself in pain that I realized, I may lose my chance to illustrate. I was terrified of what my future held as 2 painful medical conditions collided.
At first, all I knew was I went home with horrid headaches after long days of looking at the computer. I remember begging for a glare screen for my work computer. The migraines were mind numbing and caused profuse pain like I had never felt. This was during the time of raising 2 young children and life was hectic. My boss was furious with me and even asked if I even liked my job. I never felt so low.
Along with the migraines, I started suffering from the pain of what felt like a terribly infected tooth. My dentist looked at it and extracted my molar and a few other teeth. Before long, the pain wasn’t dissipating and I was referred to an ear, nose, and throat doctor. He quickly told me I needed surgery.
To this day, I look back on how young the doctor was and wish I would have questioned the procedure and his experience. My surgery did not go well. Pain in my face overcame me.
I didn’t understand at the time, nor did the doctor, why I didn’t fare well after surgery. I will never know, but truly suspect damage was done to my nerve during or right after surgery as the sinuses run right next to it.
The day after I came home from my operation, I had packing placed up in my maxillary sinus area to stop the swelling from my surgery. We were called by a nurse that told me to remove the packing, at home.
We questioned her and asked her to touch base with the doctor. She was very unhappy as he was out-of-town, I was clearly disturbing her. I insisted. She called back and said that she spoke with him and he said to do so.
She was wrong, and after I learned she most likely lied. Upon standing in the bathroom, scared to death, I did as instructed. Blood shot everywhere, it wasn’t good. A few days later I visited my doctor for a surgical recheck. He confirmed this shouldn’t have happened, I was supposed to have waited a week for him to remove packing, in office.
The Second Diagnosis
Over the course of the next few years, the pain gradually subsided to what I thought were migraines and a persistent mouth pain. Finally, the pain was so bad I ended up referred to a neurologist. It took them little time to diagnose me with TN or damage of the trigeminal nerve.
There is a nerve on each side of our faces that separates into 3 branches. Any or all of these can get damaged by trauma or by a blood vessel rubbing on the nerve and wearing a hole through the protective layer, or the myelin sheath of the nerve.
Raw nerve pain is unlike anything I had ever felt before. The pain can hit in various places depending on where the nerve is rubbing on a blood vessel.
Touching my face, sleeping on my bad side, brushing my teeth, the wind, and cold were all triggers. Pain can feel like the worst abscessed tooth, an intense ear ache, burning, and searing pain. I came home and was horrified to find I had been diagnosed with the “suicide disease,” if that doesn’t scare a person, nothing will.
Patients often commit suicide from this, the second most painful condition known to man. For a few years, I worked, numbed up on medications that dulled my mind and memory.
I may as well have been hit by a truck, and truthfully maybe a car accident did bring on my second state. Deep in the midst of my graphic design career pain began to sneak into my neck and hands. At first it was discomfort in my back, then my neck, then my arms. Little, by little I hurt more.
It was very subtle so I don’t really know when it truly started. What I do remember is the day that broke me as a full-time designer doing production work. The 8 hours at a desk finally took its toll. Most designers would be lying if they told you they weren’t worried for their wrists, back, and the amount of time they sit.
My career was stopped dead in its tracks and medical appointments with many doctors were my everyday life. I found myself at the Mayo Clinic in Rochester and then enrolled in a pain program. I quickly realized over the course of a year that my hands continually hurt so bad I couldn’t even hold a glass.
Fear filled me, I felt that I had let my talent slip by me and now it was wasted. My pain drove me to draw before I lost my ability. All of the images you see on my website were to help me emotionally come to terms with the diagnosis that finally came, Fibromyalgia.
I felt like every morning I played Russian roulette with the symptoms I was to face each day. Some days it was feeling like I had the flu, my body hurt, joints ached, and more. Other days it was a fatigue unlike any I had ever experienced.
My reason for writing this is not for sympathy, but rather to finally admit to people and perhaps even myself there are conditions I have. I tried to listen and convince myself that this would pass.
I didn’t need the medication, nor to pace myself. I started to believe this truly was in my head. There were times I just convinced myself I had to make my body do what it didn’t want to, I was told “I can’t” shouldn’t be in my vocabulary. Following this belief lead me to 3 months in therapy from pushing myself way too far.
Honoring Who I Am
Reading a post, just yesterday made me realize, I can’t continue to be ashamed of my diagnosis. I must find my voice and speak my truth. I literally have lost relationships because I can’t push myself as far as people want me to or it is too painful for them to see the real me.
This turned me inside of myself, I hid and felt ashamed. Upon reflection, I realize I will never truly begin to get better until I honor this as a part of me. It is who I am. Life has now changed. I am not a bad person for what my diagnosis has made me, nor a failure.
I could be angry, but with chronic and intense pain comes a unique experience. You truly feel everything exquisitely. I have learned to love harder and to really look at the value of every day. Sure I struggle and have plenty of hard days, but I also have been blessed with the insight of being mindful.
How many times have you gone for a walk and taken for granted you can climb any hill you wish? I always did. Now I have to think about what energy it will cost me and analyze if I can hike or clean the house. Sadly, my choices of today impact the next day or more.
Overdoing activity may have me down for the next day as Fibromyalgia is the improper use of energy in my body. It can cause a power surge, also known as chronic fatigue.
I truly do not know how this will affect me in the long run. Fighting my battle with trigeminal neuralgia has left me facing an MRI in a week and we will be looking at possible radiation to my face or brain surgery. Over my last several year medical battle, I found my inner creation was the only thing that was healing to painful emotions.
With all of this looming ahead of me, I pray whatever procedure I have will not result in a stroke or blindness. My website has become my therapy, now along with my blog. Hopefully, I can continue to do something that I adore and make my living, from home.
My creativity has been my saving grace and therapist. I draw my problems away. Someday I hope to make just enough from this endeavor to donate proceeds to trigeminal neuralgia and fibromyalgia research. Remember, always honor who you are and don’t wait for tomorrow to do what you were meant to!
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